Treatment possibilities available for Trigiminal Neuralgia? I haven’t done well at all on any of the anti-epileptic medications. It all seems so hopeless! Which specialist is best to see?
Treatment possibilities available for Trigiminal Neuralgia? I haven’t done well at all on any of the anti-epileptic medications. It all seems so hopeless! Which specialist is best to see?
I didn’t know where to start because I didn’t know what I had. I started with an ENT Physician’s Assistant. That led to two MRI’s. Then I saw my regular doctor at Mayo and she suggested seeing a Neurologist. I’m taking Tegretol but haven’t gotten up to full strength yet. I hope you find your answer soon because the pain is very hard to bear.
Treatment possibilities available for Trigiminal Neuralgia? I haven’t done well at all on any of the anti-epileptic medications. It all seems so hopeless! Which specialist is best to see?
Treatment possibilities available for Trigiminal Neuralgia? I haven’t done well at all on any of the anti-epileptic medications. It all seems so hopeless! Which specialist is best to see?
Hello @nursejudith. I am sorry you have been experiencing flare ups and are feeling hopeless. I am so glad to see that members @mpeters and @denny2788 have joined you to share.
I have triameglia, which is not like some people. I have been going to an acupuncturist for years for pain. My pain is gone if I get there right away and do several sessions. We are all different, but acupuncture is drug-free and can help. Many insurance companies pay for it, and the main thing is to find a good acupuncturist. I go to one from China, and he does a lot of different modalities besides needles.
So sorry for everyone who has constant pain.
i have Idiopathic neuropathy and its in my head neck shoulders arms hand both my legs and feet even between my legs. In others words whole body. I had it for almost 3 years and its starting to get worst. taking pregabalin 300 daily along with duloxetine 30mg along with celecoxib 400mg daily. I am afraid it will take my eyes and hearing along with my limbs which leaves nothing left to work with except pain and pills. I am looking into stem cell therapy, prednisone or IVIG therapy. If anyone has had any success with the above mention treatments I would love to hear from you.
You sound similar to me except mine is mostly left sided plus central things (except for my tongue/ throat). Mine reacts well to steroids but that doesn’t seem to be a solution. Did you ever find some relief?
The only thing any of my Drs. have prescribed (and that was my neurologist) was/is Lyrica. Switched to generic about 6 mos ago & that is working fine so far. Been on Lyrica for about 15 yrs. Recently my ortho surgeon's office said that Lyrica breaks down the ends of bones. Haven't heard this before. Gonna ck into this further.
I have been on Lyrica for about 1 year. I was on 75 mg twice a day, but I was sleeping 18 hours a day. Now we are trying 50 mg. I still have some pain, especially if I brush my teeth or eat. I use Ambesole (baby teething medication) which gives me some temporary relief). How are you taking the Lyrica?
Georgina
i have Idiopathic neuropathy and its in my head neck shoulders arms hand both my legs and feet even between my legs. In others words whole body. I had it for almost 3 years and its starting to get worst. taking pregabalin 300 daily along with duloxetine 30mg along with celecoxib 400mg daily. I am afraid it will take my eyes and hearing along with my limbs which leaves nothing left to work with except pain and pills. I am looking into stem cell therapy, prednisone or IVIG therapy. If anyone has had any success with the above mention treatments I would love to hear from you.
Hello, I have been on Lyrica for about a year. Terrible pain in the left side of my jaw, Pregabalin seems to be the answer for me. Currently taking 50 mg twice a day, but I was on 75 mg 3 times a day, and sleeping 18 hours a day. I have Ambesole (baby teething Medication) that I rub on my gums when ever they begin to hurt. Gives me enough relief I can eat my food, but I have not found a solution to be able to brush my teeth. Have you been placed on any stretching exercises? I have two knee replacements, 2 hip replacements, and a shoulder replacement. Occasionally I have muscle spasms, and if I begin stretching exercises the pain goes away. I do not know if this would be helpful to you, but you might check with your doctor.
i have it right now, for the last 11 days. It's another symptom of multiple sclerosis and you should see a neurologist if you haven't yet.
I take gabentin (Neurontin). It usually helps, it isn't helping much now, though the pain has localized for a change, not spreading up my face and around my chin as it usually does. it's in my mouth. Very hard to eat drink take my meds stay awake keep my balance can't go out too scared to shower...
so maybe shouldn't recommend but the pain does seem mediated. is better with it than without it. 300 mg + 300 mg, 400 mg at bed. rubbish regimen, never enough. 600+600+1200, and sometimee i've built up to 2400.
i have it right now, for the last 11 days. It's another symptom of multiple sclerosis and you should see a neurologist if you haven't yet.
I take gabentin (Neurontin). It usually helps, it isn't helping much now, though the pain has localized for a change, not spreading up my face and around my chin as it usually does. it's in my mouth. Very hard to eat drink take my meds stay awake keep my balance can't go out too scared to shower...
so maybe shouldn't recommend but the pain does seem mediated. is better with it than without it. 300 mg + 300 mg, 400 mg at bed. rubbish regimen, never enough. 600+600+1200, and sometimee i've built up to 2400.
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Treatment possibilities available for Trigiminal Neuralgia? I haven’t done well at all on any of the anti-epileptic medications. It all seems so hopeless! Which specialist is best to see?
I didn’t know where to start because I didn’t know what I had. I started with an ENT Physician’s Assistant. That led to two MRI’s. Then I saw my regular doctor at Mayo and she suggested seeing a Neurologist. I’m taking Tegretol but haven’t gotten up to full strength yet. I hope you find your answer soon because the pain is very hard to bear.
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1 ReactionTry accpuncture it helped me.
Hello @nursejudith. I am sorry you have been experiencing flare ups and are feeling hopeless. I am so glad to see that members @mpeters and @denny2788 have joined you to share.
You will notice that I have moved your post into an existing discussion on this topic, which you can find here:
- Trigeminal neuralgia: What helps stop the pain?: https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-5/
Have you been seen by a Neurologist recently?
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2 ReactionsI have triameglia, which is not like some people. I have been going to an acupuncturist for years for pain. My pain is gone if I get there right away and do several sessions. We are all different, but acupuncture is drug-free and can help. Many insurance companies pay for it, and the main thing is to find a good acupuncturist. I go to one from China, and he does a lot of different modalities besides needles.
So sorry for everyone who has constant pain.
You sound similar to me except mine is mostly left sided plus central things (except for my tongue/ throat). Mine reacts well to steroids but that doesn’t seem to be a solution. Did you ever find some relief?
I have been on Lyrica for about 1 year. I was on 75 mg twice a day, but I was sleeping 18 hours a day. Now we are trying 50 mg. I still have some pain, especially if I brush my teeth or eat. I use Ambesole (baby teething medication) which gives me some temporary relief). How are you taking the Lyrica?
Georgina
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2 ReactionsHello, I have been on Lyrica for about a year. Terrible pain in the left side of my jaw, Pregabalin seems to be the answer for me. Currently taking 50 mg twice a day, but I was on 75 mg 3 times a day, and sleeping 18 hours a day. I have Ambesole (baby teething Medication) that I rub on my gums when ever they begin to hurt. Gives me enough relief I can eat my food, but I have not found a solution to be able to brush my teeth. Have you been placed on any stretching exercises? I have two knee replacements, 2 hip replacements, and a shoulder replacement. Occasionally I have muscle spasms, and if I begin stretching exercises the pain goes away. I do not know if this would be helpful to you, but you might check with your doctor.
-
Like -
Helpful -
Hug
1 Reactioni have it right now, for the last 11 days. It's another symptom of multiple sclerosis and you should see a neurologist if you haven't yet.
I take gabentin (Neurontin). It usually helps, it isn't helping much now, though the pain has localized for a change, not spreading up my face and around my chin as it usually does. it's in my mouth. Very hard to eat drink take my meds stay awake keep my balance can't go out too scared to shower...
so maybe shouldn't recommend but the pain does seem mediated. is better with it than without it. 300 mg + 300 mg, 400 mg at bed. rubbish regimen, never enough. 600+600+1200, and sometimee i've built up to 2400.
good luck with this nasty hateful synptom.
best.
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3 Reactionssorry about any typos couldn't fix them all